On the Saturday 4 February 2023, eight-year-old Olly, our younger son, was suddenly taken seriously ill, being rushed to hospital with severe breathing difficulties. He went from running a cross country race in the morning to being on a ventilator in intensive care at Leeds General Infirmary (LGI) 24 hours later.
We soon found out that Olly was suffering from heart failure, and that his lungs had filled with fluid. He needed open heart surgery to fit a mechanical replacement to a defective mitral valve, which is the small flap in the heart which stops blood from flowing the wrong way.
Olly underwent open heart surgery at Leeds General Infirmary. Credit: Tim Brooks.
It was a terrifying situation for us, one which came completely out of the blue. Olly has always been an active child who had shown no signs of any issues before this moment, and the speed at which he deteriorated came as a huge shock to us all.
Olly ended up spending a total of 48 days at Leeds General Infirmary, many of which were in an induced coma on the paediatric intensive care unit (PICU), as well as on the cardiac high dependency unit. For much of that time, we were fortunate enough to stay at Eckersley House, a ‘Home from Home’ run by The Sick Children’s Trust.
To have somewhere to stay just a few minutes’ walk from Olly’s hospital bedside was invaluable. With our home in Ilkley being an hour away from LGI, we know that without Eckersley House we would have had to drive to and from the hospital every day, which would have really taken its toll on us.
Staying in Eckersley meant we could spend a significant amount of time with Olly, allowing us to get to the ward early in the mornings so we could attend the 7.30am shift change. Being able to hear those medical handover discussions first hand was really important, keeping us fully informed on how Olly was doing. We were also able to stay as late as we needed, which was usually until the late ward round at around 9pm, and then could just walk back to Eckersley, grab a bite to eat, have a shower before getting some much-needed sleep. We could really look after ourselves there, being able to make some home-cooked meals and wash our clothes.
Olly with big brother Robert. Credit: Tim Brooks.
Olly’s replacement valve was fitted on 1 March, and his condition significantly improved in the days that followed. However, the three weeks spent in PICU before surgery meant his muscle mass was significantly depleted and he had also become dependent on the sedatives he was given when ventilated. This meant a long weaning plan and lengthy rehabilitation post-surgery.
Whilst those few weeks were undoubtedly the worst of our lives, they would have been immeasurably worse had it not been for The Sick Children’s Trust and Eckersley House. It allowed Olly’s big brother Robert, who is ten, to come and stay, which was so important for all of us. This whole thing had a big impact on Robert, who suddenly found himself staying with friends and grandparents for much of the time. For Robert to have the chance to stay with us at Eckersley House and see Olly helped bring the family back together.
Olly taking part in his golf fundraiser. Credit: Tim Brooks
Happily, Olly is back fighting fit with his new heart valve in place. So much so that a few weeks ago he completed a 48-hole golf challenge to raise money for the charities that supported us during his time in hospital. Including Gift Aid, Olly has raised an amazing £10,000, which is being split between The Sick Children’s Trust and the Children’s Heart Surgery Fund (CHSF), who were also incredible in supporting us during the darkest of times. CHSF funded much of the equipment used to identify and monitor Olly’s heart condition, including an International Normalised Ratio (INR) home testing kit, which tells us how long it takes for Olly’s blood to clot, reducing the number of times he needs to return to hospital for blood tests, which is invaluable.
We have been amazed at how determined Olly has been throughout his recovery. There were bumps and scares along the way, but we are so proud of him and so grateful to everyone, from friends and family to The Sick Children’s Trust and Children’s Heart Surgery Fund who helped us for the seven weeks he was in hospital.
Helen and Tim Brooks, Olly’s mum and dad
The Brooks family having scaled the O2 in London. Credit: Tim Brooks.